on being a writer & raising a disabled child with an undiagnosed illness

Saturday, July 14, 2012

Part 3: What Health Care Means to Me, an unending series of spare parts

It's such a delight to be proved wrong! Really, I was going to post an update after the Supreme Court decision on healthcare, but then I lost power in the derecho storms in the WDC area on June 29 and we were nomads with Robert for three days. And, well, I've been catching up with my life ever since.

The power outage reminds me of my friend Renee. Some years ago, we were sitting in the sun at a small wrought iron table, having lunch outside a restaurant. We talked about Robert and some complex matters in her own family. And she turned to me, in the quite urgent and mostly serious way she has (if you know my friend Renee), and grasped my arm with her hand and said, "at least we're not refugees, running from our homes. That would be worse. That would be the worst." Or something like that.

At the time, I thought she was probably right. But having practiced my cowboy driving skills for hours on end, motoring through Washington and environs around downed branches and wires and major thoroughfares along which 50 percent of traffic lights were out, I don't know if I agree with her any more. I became used to living on the road surprisingly well; in fact, I've kept an evacuation bag for Robert in his closet ever since 9/11/01. It made sense, the way a lot of things made sense right after 9/11. The green backpack is still in his closet, but in the last 3 or 4 years I've gotten sloppy about refreshing the medication and other supplies in it.

While I played the role of a Pepco refugee, if only briefly, I had a purpose and a direction: find food, gas, air-conditioning. Life may have been stripped to its basics, but the day was laid out before me. The problem with my ill-considered analogy is that refugees can't go home again, whereas I was asleep in my clothes on my very own bed three days later.

Round and about, eventually, though, I will come to my topic, which is healthcare. The thing about the 2012 Great Pepco Outage is that no one rambled on about who deserved to have power and who didn't deserve to have power. People may have cursed their absurdly fortunate neighbors, just there, across the street! who did have power, but no one really thought anyone had earned the right to have power or not. All we were conscious of was the lack of it. Acutely conscious of. And what it meant not to have it. Even the people who did have power were pretty good about sharing it, pitching in, doing their part. And I'm assuming those people sleeping under dry sheets in their air-conditioned chambers even thought to themselves before nodding off, at least, there but for the grace of God go I …

IT WAS ALL RANDOM. We knew that, we who were without lights and we who had no working electrical sockets. An the lack of power affected even those who did have power: how many supermarkets were shut down, out of milk (though stocked well with toilet paper, I imagine)? How many restaurants were closed? How long did you have to wait in line to buy gas at a working station? How many near-accidents were you in trying to exit your neighborhood at a non-operative traffic light while no one bothered to treat it as a legal four-way stop? Was your child's daycare center open or closed? Life was disrupted for everyone.

At least we weren't talking about merit and basic human needs. That's the worst.

A few days ago, I saw this posted on my friend Sara's Facebook feed:

"Dear portage little league parents discussing Obama care next to me: the fact that you drove here in an escalade makes your opinion on who deserves insurance meaningless. I do think this means you need to take the Jesus fish off your car, though."

This is the most important statement I have ever read on the problem with healthcare in America. It just says it all.

Because that's the upshot of all our arguing about this ridiculous subject: healthcare isn't a human right, it's a fellowship to state college. As for WWJD, well, opening my own Bible to random passages in Luke, I see immediately words such as these: "He who has two coats, let him share with him who has none; and he who has food, let him do likewise," and "give to every one who begs from you; and of him who takes away your goods do not ask them again." Right. Same Jesus who was known all over Palestine for healing the sick. I guess the people talking about healthcare in Portage had to drive to Little League in one Escalade because they'd given the other away to a homeless man.

A few years ago, I read most of T.R. Reid's book, The Healing of America, in which he suggests that universal healthcare arose in other countries through some sense of national commonality or other community sensibility: the Brits pulled together after WWII, the Germans rallied round the idea of the common German man (or person, I suppose), and I don't recall what drove the other countries' reasoning. Fairness, I suppose. Cost savings. Desire to improve quality of life. You know, all that reasonable stuff.

Well, not here. In his first chapter, Reid says, "Americans generally recognize now that our nation's health care system has become excessively expensive, ineffective, and unjust." Note that word "unjust." Read the status update above again. "Unjust" because, apparently, that's the way we like it. In his conclusion, Reid notes that "the American reliance on private, for-profit health insurance companies for the bulk of medical coverage is in accord with American values of capitalism and freedom."

As Americans, we value not only capitalism and freedom, we also value merit and "hard work." Because our health insurance system developed as a jobs benefit, we have become accustomed to associating access to health care with the ability to hold a job. People who can't hold jobs don't deserve "benefits" like health care. Because they are lazy, apparently.

Or at least that's the way Americans tend to think when we think at all. Most of the time we're too busy being independent pioneers and starting our own businesses and raising our children according each to her own individual belief that we really don't have time to think. Or when we have time to think we mostly think that Americans who whine about health care are lazy or have government jobs, otherwise known as "sucking on the government teat." Or some less polite spelling. I see that in comment threads all the time, which my husband constantly tells me to stop reading.

Apparently, though, it's OK to suck on the corporate teat because that's what most Americans do. Personally, I don't see much of a difference: what makes dependence on corporations and the jobs and benefits they supply any better than some kind of dependence on government? Dependency is dependency, corporate or otherwise. I thought we were a nation of freedom-loving independent contractors, hacking through the wilderness, speaking our minds, being independent and free and all that. Oh, wait. I forgot. Independent contractors don't get health insurance. It's in the Constitution.

So we'd better amend the statement above to say, "People who can't hold corporate jobs don't deserve benefits like health care." Even so, that gets complicated. Do all the people who work for MacDonald's get health insurance? That's a corporation.

The whole chain of logic now becomes, as we used to say in high school in the 1980s, increasingly bogus. The freedom-loving people who start their own businesses or earn their own living their own way have an awfully difficult time securing health insurance. But most Americans don't understand that or understand why because corporations and insurance companies make it impossible for us to understand the costs attached to health care of any kind.

Americans who receive insurance as a job-related benefit generally pay very low premiums. COBRA is a shock to the recently unemployed as it reveals the true cost of insuring a family at a minimum of $1,500 to $4,000 per month. That's a second mortgage. Or a second and third combined.

Insurance companies compete for corporate clients by trying to figure out how to make routine care seem extremely cheap to people with minimal health problems, while masking the cost-sharing involved for complex health problems. Want to see a doctor? It's only a $10 co-pay under our plan! Kiddie vaccinations are free! Generic drugs, free the first 3 annual fills! Most brand-name drugs start at $50 per fill! Free generic antibiotics! Need to see a specialist? $30!!!! (Try figuring out what it would cost you to have your gall bladder out or what a prosthesis might cost were you in a car accident, or physical therapy, etc., etc., etc.)

What does it actually cost to see a "specialist"? Well, that depends, but in the DC area, visiting a cardiologist will set you back $350. But if you have insurance, paying only $300 per month as your "share" of the premium, it costs $30. Want to see an internist, retail? About $150 per visit.

A doctor friend of mine was appalled by the attitude of some of her patients when her practice decided to stop accepting insurance altogether. The practice did, of course, give you a form you could file with your insurance company to recoup some of the cost, you know, the way insurance used to work in the 1970s. But, but, but, her patients complained, what do you mean I have to pay $150 up front? It's too expensive. As my friend pointed out, these were the same people who went to Nordstrom's every weekend and bought $300 shoes.

We expect health care to be cheap or free. It's not. And the very system we laud for understanding how much we value capitalism and freedom works intentionally to make the costs of our system opaque.

Ever want to cause a stir? When your doctor tells you you need an non-urgent procedure, ask him or her how much it will cost. Your doctor won't know. He or she will tell you to ask the staff in the front office. You will ask the front office staff and they won't be able to tell you, either. In fact, they'll look at you with an expression of shocked indignity. They may even look hurt. Why would you want to know how much this will cost? Or what your share of the co-insurance will be?

Um, let's see. The last time I gave a green light to a procedure for Robert, botox injections, the cost to me (with an excellent insurance plan) came back at about $1,500. The entire bill was over $2,000 as a CSF draw for a genetic test was included and I could never figure out how to separate the genetic test from the bill because, frankly, it wasn't spelled out with that much specificity. Robert hadn't had botox treatments for spasticity for a long time--years, in fact--and I had no idea how much the costs associated with it had risen. (BTW, the entire retail cost of this little procedure was over $30K.)

Robert had botox injections last October. My insurance processed the charges before Thanksgiving. Children's Hospital sent me a first bill early in December. Robert was hospitalized with pneumonia just before Christmas and I never got around to working on medical bills until January. In January, I wasn't sure how I was going to manage paying this particular bill, so I sat on payment for a little while. In early February, one of the nastiest collection agencies I've experienced called me on behalf of Children's Hospital and demanded that I pay the bill.

And my doctors wonder why I want to know how much things are going to cost.

I'm now engaged in a lengthy conversation with one of the specialists I see, trying to determine how much a procedure I need will cost me out of pocket. The first reaction was surprise. The second was to tell me that I would need to contact my insurance company. I politely pointed out that I didn't have access to rate and diagnostic coding information, nor did I have access to the contract rates that this office sets with my insurer. Which they didn't even appear to know. I mean, this created confusion. They could tell me how much they would bill my insurer, which is not the same as the contract rate, and suggested that I budget at 15% of that. I said, as nicely as I could, that that didn't work for me. And I also pointed out that the surgery charge was only part of it. There was also going to be a facilities fee, an anesthesiologist's bill and a bill for the anesthesia drug itself.

What I wanted to say was: I have to sign a form telling you I promise to be financially responsible for these charges before you operate. And you want me to sign this form without explaining to me exactly what the charges will be. And if I fail to make payment in what you consider to be a reasonable time frame, you will harass me with a collection agency until I do. So please don't look at me as though I'm insane when I want you to explain what the medical treatment I'm purchasing from your office is going to cost me. I don't walk into the Apple store and sign an agreement to buy a computer without knowing the price, bring it home, start using it, and then get a bill--and if I express shock at the amount I'm asked to pay be told I can't take it back or trade it in for a cheaper model.

Who deserves to have medical care? Everyone. Our dependence on corporations to both provide us with access to care through the form of insurance, and health insurers to then administer that care results in a profound ignorance on our parts about what that care is worth and how much it costs. That's not capitalism in action. Capitalism in action happens when there's adequate price transparency. Only then can consumers apply the controls of supply and demand.

If we all had to apply the controls of supply and demand, maybe we'd have a bit more empathy for those people who can't afford a health insurance policy because they're self-employed or can't afford to pay retail for a doctor's visit or a procedure. Have you ever bothered to figure out the actual cost of your insurance policy or the actual cost of a procedure? It's more than you can afford, too, even if you have a pretty good job.

Obamacare takes a running start at equalizing the cost of access to an insurance system. Because that's what we all said WE WANTED--we didn't want "socialized" medicine where everything is "free." (As my daughter used to say, Hello, you people out there!) We wanted an insurance system through which, we were certain (as in My Little Pony-land) everything is paid in candy corn and rainbows. The majority of us, let's face it, don't have any idea what we're talking about when it comes to the retail cost of our policy or our medical care.

None of us have any idea, either, how our electricity arrives at our home or how much it costs to run a power company. We just know how pissed off we are when the lights aren't on and the A/C doesn't work. And we want it back on, now.

We all need to keep in mind that, just as the electric grid goes down in a random pattern, the costs of health care are causing job-related benefits to be shut off in random patterns: if you're a great employee, but can only work part-time, why can't you have benefits? Just because you're a janitor instead of a CEO, why can't you have benefits? If you want to start your own business, be a real "independent and free" American, why can't you afford coverage? Who works harder? Who works the most? When we increasingly believe that people have to buy a postsecondary education that they can afford, why do we still attach premium health benefits to top jobs filled primarily by people with Ivy League degrees? Why does someone who works for a larger company than your lean, mean, fighting machine of a company pay less for their health insurance plan than you do?

When I overhear what people say and write about health care reform, it's as though I'm listening to people say that Pepco should be deciding who deserves to have air-conditioning today.

3 comments:

The Green Party platform, at first glance anyway, looks almost good enough to be a spoiler though I've heard nothing about any plans re infrastructure, e.g.hardening the grid. I'm monumentally disappointed with this administration. A result of my apparently congenital naiveté, I suppose. And the fact that it felt so great to be hopeful. I hate to use the word "disillusionment" because the implications are chillingly dire.

As someone who worked for a hospital or insurance co for 20+ years, the mom of a severely autistic child and a patient who just had an EGD, I know all too well this territory. I knew the EGD was a r/o procedure and so it was. They know what isn't wrong, but it's still unclear why I have that indigestion or lump in throat. Maybe it's age or STRESS (ya think?) It doesn't appear to be life-threatening, so I should be jubilant. But, now I am on a payment plan (at least they agreed to that) and notably reluctant to do any any more tests or specialists because I just can't afford it in time or money. When GI suggested I could check this out with an ENT, I almost had a laughing fit. You are right. They won't tell you what you will owe because they are afraid that they will be bound by it (after the contract rate changes or they end up billing different codes than they anticipated), but you are bound by it no matter what.

My son's treatment and meds are vital, so I have little choice. I really feel like my own treatment is something I can postpone or avoid.This is so mixed-up, but it is life in this healthcare climate.

It is weird to me how people don't even have their best interests at heart when it comes to this issue. My parents didn't have any coverage for over 10 years because my dad was self-employed and my mom has preexisting conditions, but they are still scared of universal healthcare. But, they are so grateful for Medicare ( I am grateful for it too for their sakes).

I don't think universal healthcare is magical either. But, I am really confused as to why people think the current situation is something to cling to with all your might.

I look at our current system — when one is privileged to have coverage — as the purchase of a discount program. Lucky us.

When my then-23-year-old son had a heart attack (reaction to prescription drugs), my insurance company initially rejected the claim because his hospital visit wasn't pre-approved. I asked the insurance representative if my son should have scheduled his heart attack for, say, a Wednesday.

They eventually covered "their share" of it, but not until I went to all-out war with them.

It's all so shameful — every aspect of how this country looks at illness and the costs associated with it and how we address them.

As a self-employed, self-insured single mom and only parent, who is still supporting my son because he falls through all the social services cracks (and they are more like crevasses), I will enjoy a raise in the form of lower premium costs in 2014 if the powers-that-be don't f**k it all up.

Copyright

Robert at age 10

The Back Story

My son Robert developed typically until he was 13 months old. In 1998, shortly after his first birthday he had a dramatic medical breakdown over the course of a few days. He was left with multiple disabilities: mobility, speech, feeding, and overall muscular deterioration.

In 2012, we pursued whole exome sequencing through Rare Genomics Institute and found an answer: Robert has dystonia 16, from rare and de novo variants to the gene PRKRA.

This blog remains a record of my thoughts for many years as we edged toward a diagnosis. There is no true chronology to this blog, just as our lives no longer follow a direct path into the future. I write about the past and present interchangeably, and try to explain what our lives are like. Sometimes I write about public policy and how that affects our lives. Sometimes I write about literature or poetry.

Other Good Stuff

Thanks to Wyatt

The name of this blog is drawn from Thomas Wyatt's poem "They flee from me." Wyatt's poem describes his perplexity with a 'newfangled' female independence in amorous relationships. But the phrase, "now they range, busily seeking with a continual change," represents for me the necessity of growth--by constantly moving forward and seeking new experiences, new questions, new answers. It is my favorite poem.